IS THIS MDS RELATED?

[PhyllisA]

Has anyone out there expiriced these symthons?

For appx four weeks now I have been dealing with low grade fevers (99.0 – 101.9 ),adominal pain,diarrhea (as thin as water) & fall a sleep a lot Plus when I get my Lab/CBC & last TX my reports show that my WBC have been high (25.7 – 32.9 ) & PLT count running from 63 on4/10 than after getting a TX on 4/11 = 39 I went to my hospital ER on the 7th had x-ray & CT done and after 5hrs they told meI had an infection & put me on Levaquin for 9 dys but still have these problems and yes I contacted my MDS doctor office but haven”t heard back from them as of yet BUT like i asked has anyone had these problems

THANKING you all in advance for your replys
Ron from Michigan

[GL]

Dear Phyllis,

Please contact your MDS doctor urgently. This may be realted to MDS.

Good luck,
G

[CarolineG]

Ron and Phyllis,

When diarrhea is completely watery with no signs of any consistency at all and there is alot of abdominal pain, a germ called C-Diff could be associated. It is a begger to get rid of and can be very dangerous if left unaddressed. Ask the doctor to check a sample. My Dad had to be on several rounds of Flagyl (one of the only antibiotics which kills off the C-Diff germs.) He also had fevers during the time that he was fighting it, sometimes very high and sometimes just low grade.

Keep us posted as to what is going on.

Best Wishes,
Caroline

[Terri]

definately keep calling that doctor until you get through, nothing to Play around with.
I hope things get better.
Peace

[patti]

Ron,

Mom’s naturapath told us that when someone gets a transfusion it’s not uncommon for platelets to actually drop a little. Even though it’s red cells that are transfused he said the body in some ways is still fighting foreign blood and does affect platelets as a “fighting off” mechanism. He said for most people the platelets will come back after a few days.

I think Caroline hit on a good possibility for you. I would definately call your MDS doc. Be pushy.

Best wishes,

patti

[Neil]

Hi Ron,
The high WBC could be a result of infection, but may be other cause/s. MDS patients have multiple issues. Get to your hemo! NOW!
The high temp is another reason to get to your hemo! NOW!
The TX probably “diluted” your platelets. The avg body has about 5 liters of blood. Get a TX and add about another liter and you spread the 63,000 on 4/10 over greater volume after the TX thus the lower count. Also consider the tolerances in the equipment used to measure plts.
My doc has me contact him on any abnormal variations in my health, particularly temp. The high WBC should be addressed now.

[helenr]

Ron

We are sorry to hear that you have been having a miserable time lately. David has had a similar infection which only lasted a few days. His white count always rises with a slight problem but falls again. Apparently MDS affects your immunity a lot and you have to be careful to treat problems quickly. Our local Dr. said that even a cold needs to be watched. I do hope the treatment works quickly and you are better soon.

David takes Lysene, Coenzyme Q10, Zinc complex and echinacea for immunity as well as B complex ( no extra iron), vit E and fish oil. So far they have helped even when little ones have colds.

Good luck, Helen

[PhyllisA]

Thank you all for your responses. We did finally get a response from the hemotologist’s office in Ann Arbor. Ron has an appointment on Monday…couldn’t get in before then because the doctor is not in this week. We are to take all the films from scans and x-rays that were done here at the local ER, plus he will have more blood work done there.

Ron has run a low-grade fever off and on before, but this has just not gone away, plus his WBC has always been within a normal range, but with the last few tests it has continually increased. Yesterday his temp went up to 102.2 and never went below 101. Needless to say he has no energy. They also told us if things got worse to bring him to the ER in Ann Arbor.

Thank you again for your responses. We are so glad for all of you and the forum…it helps a lot to be able to check with people that have had experience and that care for one another.

All our best to you,
Ron & Phyllis

[al’s wife]

Phyllis,
I wouldn’t wait till Monday. I’d take Ron to the ER now. I went through this many times with my husband. Believe me, you don’t want to wait till Monday. The ER would be able to start fluids and antibiotics. Best luck.

Lynn

[al’s wife]

Phyllis,
I wouldn’t wait till Monday. I’d take Ron to the ER now. I went through this many times with my husband. Believe me, you don’t want to wait till Monday. The ER would be able to start fluids and antibiotics. Best luck.

Lynn

[gemloyear]

Phyllis, Ditto all of the above advice. That high a temp. with MDS. is considered serious. He should go to the ER, his infection could progess into pneumonia. My husband has had pneumonia with temps. at that level. The diarreha should be treated more aggressively also. My husband has had severe problems with that, he developed colitis as a result. Has any one suggested yogurt? It’s a good idea to take yogurt anytime one is on antibiotics, it helps to prevent intestinal troubles.Glen balks at going to the ER, but it has saved his life more than once, I’m sure. Good luck, I hope that everything turns out well for Ron. Please keep us posted, we all care.
Ellie

[gemloyear]

Hey all, Is the forums time goofed up? Or is it only my computer?Date and time? Actually 4/20/2006 3:46 PM. I don’t know how to fix it. wish someone would.
Ellie

[patti]

Hi Ellie,

I noticed the forum time awhile ago and mentioned it to my husband. The way it is now it looks like no one on this board ever sleeps or only posts at 2:00am!!

patti

[Suzanne]

Don’t know what zone the Forum is using for time. Guess it depends on that and where the poster is in the world. It makes sense that most post in the evening where ever they are.

[Suzanne]

The time on my message has the Am and Pm reversed so maybe that answers it. I posted the above message at 7:59 AM this morning! I am posted this one at 7:48Pm. So much for the thoughts of so many staying up all night. !

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